From battles to journeys: changing how we talk about illness and cancer

A new ad for Toronto’s Hospital for Sick Children has reignited a debate over the use of metaphors for illness. The ad features images such as kids in pyjamas running into battle beside soldiers in full regalia. It’s been praised for its empowering message. But it has also been criticized for perpetuating the idea of war as a metaphor for disease.

Articles about the ad in the CBC, Vice and The Globe and Mail covered the problems with the war imagery. “Battle is not always an apt metaphor,” Globe and Mail health columnist André Picard wrote. “Sick is not weak. Sometimes sick is just sick.” (Sick Kids says that the campaign is about the hospital fighting, not the kids, and that the response has been overwhelmingly positive.)

This conversation isn’t new. “There’s been a push back against the language of ‘battling’ disease almost for as long as we’ve had this language,” says Andrea Charise, a health humanities professor at the University of Toronto. A seminal work on the topic was Susan Sontag’s 1970s Illness as Metaphor. It argued that metaphors create moral judgments against patients, and aren’t helpful.

“Sontag’s argument has been especially important to people with chronic conditions, long-term disability, or terminal illnesses,” says Charise. “For them, ‘winning a battle’ is, frankly, not an option.”

Yet it’s clear that many people find responding to an illness as a battle helpful. A recent study in BMJ Supportive and Palliative Care looked at the influence of battle and journey metaphors. It found that the majority of a randomly chosen group of violence metaphors were used in an empowering way. “Some patients describe themselves as ‘fighters’ in ways that suggest agency and pride, as in ‘I am such a fighter’ and ’my consultants recognized that I was a born fighter,’” the study reads. But other people found it disempowering, including a person who wrote, “I feel such a failure that I am not winning this battle.”

War metaphors are especially successful at rallying people to donate to fundraising campaigns, says study author Elena Semino, a linguist with Lancaster University. “The whole idea of a collective enemy is well-known to galvanize people, and to make people feel that they ought to contribute to the cause,” she explains. At the same time, the charities she’s spoken to are aware that making the metaphor more pervasive might also harm some patients.

One study found when clinicians promote battle metaphors, people with cancer feel compelled to suppress their true emotions. Another surveyed more than 1,000 Canadian women with breast cancer, and found that thinking of the illness as an enemy, loss or punishment was connected to increased depression and anxiety three years later.

Neutral terminology

As a result, some organizations have turned towards more neutral terminology. Instead of “fighting” cancer, people “undergo” treatment for cancer; “cancer-free” is preferred to “cancer survivor,” and as for a disability, it’s something you “live with,” rather than “conquer.”

Those terms are “a more neutral frame, and more open-ended,” says Anne McGuire, an assistant professor at the University of Toronto and author of War on Autism: On the Cultural Logic of Normative Violence. “They allow the patient to have their own experience with their bodies.”

The Canadian Partnership Against Cancer doesn’t use battle metaphors, and talks about specific treatment plans and individual expectations instead. Some patients also don’t like the idea of a label. “I don’t want to be called a cancer survivor,” says Claudia Hernandez, who has had breast cancer. “I’m a person with an experience of facing cancer, but that doesn’t define me. I just want to be called ‘Claudia.’”

But many people still gravitate towards metaphors. “Dealing head on with cellular and biomedical markers can just be a bit of a tough cognitive leap,” explains Holly Bradley, executive director of Wellspring, a network of cancer support centres in Ontario and Alberta. “A metaphor is just more accessible.”

The illness as journey

The most common substitute for a battle is a journey. It’s a good fit, because we’re already used to the concept of life as a journey. It’s also serious enough to use with major illnesses. “The [journey] metaphor encompasses possibility: for exploration, struggle, hope, discovery, and change,” reads an article about metaphors and cancer in the Journal of Clinical Oncology.

It resonates with David Giuliano, a former United Church of Canada moderator who has had cancer for more than two decades. He sees cancer as a spiritual journey, and compares it to the Camino de Santiago, the famous pilgrimage that ends in Spain. “[This sort of] camino is rarely chosen or even welcome,” he writes in his blog. “It comes upon us, abducts us, and we choose to walk and listen — or not.”

Semino’s BMJ study also looked at journey metaphors, and found that they were used in both empowering and disempowering ways. The journey’s main benefit is that it encompasses the idea of companions, and of people with earlier diagnoses’ acting as guides. It also makes room for the idea that diseases can come with some positives. Some people describe it as trying to enjoy the new scenery of a different road.

Of course, not everyone is a fan – especially those for who think of a journey as a vacation. Cancer, they argue, is more like a trip to hell than a hike in the Grand Canyon. “Some people really hate the idea of a journey,” says Semino. “It irritates them. But it doesn’t have the same potential harmful effects [as the war metaphor], because there isn’t the idea that you could lose and it’s your fault.”

Dancing with your disease

Many people think of living with their disease as a sort of dance. U.K. author Diana Brueton, for example, wrote Dancing with Cancer after being diagnosed with terminal metastatic bowel cancer. She lived for four years with the disease, turning to various religions in her search for meaning and acceptance along the way.

This concept is also a good fit for people with relapsing-remitting diseases, like MS. Frank Gavin, who founded The Canadian Family Advisory Network after his son needed extensive medical treatment throughout his childhood, says he know many people who use it. “Sometimes the disease seems to lead, and sometimes you’re managing the disease,” he explains. “You’re learning to live with—to get along with—your disease.”

People who have cancer as thrivers

Others who have had cancer prefer the term “thriver” to “survivor,” because it shifts the emphasis from simply living to living well. The term was partly popularized by Kris Carr, author of “Crazy, Sexy Cancer,” who has been living with a rare form of cancer for a decade.

People like Carr, who are living with late-stage cancer, might be more likely to embrace the term thriver. Survivorship can be seen as an all-or-nothing idea, says Claire Edmonds, a program leader at Wellspring. “I either conquer cancer, or I don’t,” she says. “But what happens if I’m living with it? This is a scenario that’s happening much more commonly now, because treatment has altered some forms of the disease into a chronic state.”

Playing a chess match

Sports and games are also a common analogy. They keep the idea of winning or losing that we see in war metaphors, but lose the aggressiveness and violence. The idea of a game resonates most strongly with Gavin. “It’s outwitting [my son’s disease] in some ways – almost like a chess match,” he says. “There’s a puzzle aspect to it. Learning to live with it is kind of a test of endurance, ingenuity or adaptation.”

Running a marathon

Some more solitary sports, like running, are also popular. The concept that this is a marathon – not a sprint – is one that Jean Jackson, nurse counsellor and group leader at Wellspring, finds helpful. “We’re so used to the idea that we have a cold, we get better; we have pneumonia, we get antibiotics. With cancer you really have to know that it’s a marathon. If you watch marathoners, they’re slower, and very deliberate.”

Weeding a garden

Some people prefer using gentler terminology that relates to nature. Having cancer can be seen as ice that the chemotherapy will melt, for example. The idea of weeding a garden is also common, says Bradley, who points out that people often turn to what’s familiar. “What’s likely to work for each person may be predetermined by their interests,” she says.

Cancer as a character

Many people use humour in choosing how to think about their disease. It helps people regain a feeling of control, and subverts the power relationship between the person and their illness, says Semino. One person she knows referred to his tumour as Mr. C. Another nicknamed her tumour Hefty when her surgeon described it as hefty after an operation.

The body back in tune

Semino is regularly sent poems and letters from people with cancer who want to explain their own personal imagery. One that stood out was a woman who wrote about getting her cancer cells to sing in tune with the rest of her body. “It’s re-establishing harmony, rather than fighting the disease,” says Semino. “To me, this has resonances of more Eastern notions of illness as a loss of balance in the body, rather than as a Western idea of external invasion.”

Her team is piloting a “menu of metaphors” project, to help patients choose the one that they prefer. “Different people like different ones,” she says. “When they’re used successfully and sensitively, metaphors can actually help… they’re a powerful resource.”

Related Faces of Health Care

“Our bodies are jars of clay. Our bodies are imperfect. But as Leonard Cohen writes, ‘There is a crack in everything. That’s how the light gets in.’”

Congratulations for bring up this important topic on how to help patients relate emotionally to their illness. It is important for a clinician to know how to select these metaphors. It can be very rewarding to find the right one, especially in the context on counselling patients with a lower health literacy level. I am a geriatrician and I struggle to find motivational methaphors for my patients who suffer from dementia and their caregivers. I would like to see more research on this.

Congratulations for bring up this important topic on how to help patients relate emotionally to their illness. It is important for a clinician to know how to select these metaphors. It can be very rewarding to find the right one, especially in the context on counselling patients with a lower health literacy level. I am a geriatrician and I struggle to find motivational methaphors for my patients who suffer from dementia and their caregivers. I would like to see more research on this.

Thank you for this feature – well done! Personal experiences of illness are just that .. personal. Beware research approaches that curtail (wittingly or not) patients’ or families’ expressions of metaphors for illness, and that narrow interpretations on their behalf. See women’s stories of their experiences of breast cancer at http://www.healthexperience.ca – click on breast cancer.

Great perspective. I think it’s more about living with cancer than dying after a courageous battle from cancer. My spouse was treated for prostate cancer. After his recovery he wondered – should I say I have cancer or had cancer? A good question for sure. You are labelled and now have this disease hanging over your head like a black cloud. What do you or can you do other than live with it? It’s a state of mind now. It’s up to you how to move forward.

This document is provided under the terms of a CreativeCommons Attribution Non-commercial Share Alike license. The terms of the license are available at: http://creativecommons.org/licenses/by-nc-sa/3.0/. Attributions are to be made to HealthyDebate.ca, a project under the direction of Dr. Andreas Laupacis, at the Keenan Research Centre, Li Ka Shing Knowledge Institute of St. Michael’s Hospital.